Excerpts from the Journal of Dr. Gary Newhouse, MD
A callous doctor encounters a family grappling with a devastating diagnosis.
Mrs. Morrison was too busy to die. I find that’s common in middle-aged patients. She expected me to say she needed to do strengthening exercises, or to prescribe supplements or vitamins. When a patient comes in complaining of sudden clumsiness, they rarely think it’s because they’re dying.
She shook her head. “That can’t be right.”
She was the kind of patient who has no medical training but sees fit to tell doctors that they don’t know what they’re talking about.
“Yeah, you know, I like to tell people that they’re dying just for kicks. Breaks up my day a bit.” I didn’t say that, though I was tempted. Didn’t seem appropriate under the circumstances. I think I mumbled something insubstantial.
“I have a little girl. She’s ten. That just can’t be right. There’s a mistake.”
“Are your parents still living, Mrs. Morrison?”
“I don’t see what that has to do with anything.”
“Huntington’s disease is a dominant genetic trait. At least one of your parents must have it.”
She spoke very quickly, babbling and sputtering. Something about how her parents were both very much alive, and who did I think I was, asking questions like that at a time like this. Then she stopped.
“Oh, I mean – well, I’m adopted. I wasn’t thinking of that.”
“Do you know anything about the health history of your biological parents?”
“No, it was a closed adoption.” Now her voice was quiet, her eyes were wide open, staring.
“That explains it,” I said. “Now, let me give you a run-down.”
So I gave her a run-down. Fifteen years to live, give or take. She’ll lose control of her body, her voice, her ability to eat. She’ll lose her cognitive abilities. She’ll die slowly and will probably spend her last years in a nursing home so that her family can get a break from her.
I didn’t say that last part. It’s true, though. They’ll probably stick her in a nursing home around the time she loses her ability to talk, if not before.
She didn’t say anything for a while after I finished. I fidgeted with my pen for a bit and considered just leaving the room and letting the nurse deal with the fall-out. I didn’t, though. Martha, the RN on duty, would ream me up one end and down the other if I tried to pull that.
I didn’t want to be the one delivering the diagnosis to the patient. Usually I pass that barrel of fun off to someone else. I like running tests, analyzing results. Palliative care isn’t my cup of tea, and my bedside manner is, as one of my fellow residents put it, on par with that of a “sarcastic calculus professor.” But today wound up being an especially busy day, which upset my plans of sitting alone in my office analyzing the aforementioned test results.
After a few minutes, Mrs. Morrison looked up at me. “What about my daughter? Will she get it too?”
I almost swore in front of my patient. There was no way I wanted to be having this conversation at all, much less right before my lunch.
But I held it together. “There’s a high likelihood that she will.”
She didn’t lose it like I thought she would. Probably too shell-shocked.
I slipped out of the room as quickly as I could.
Checking my watch, I let out a gravelly sigh - late for lunch. I had a thirty minute break in the middle of my packed day, and now that break was down to twenty-four minutes.
It wasn’t as clean of an escape as I hoped, though. The patient’s husband and daughter were in the waiting room.
She couldn’t have been anyone but Mrs. Morrison’s daughter. Identical. Dark hair, green eyes. Very Italian nose. Husband was nondescript. That is to say, I don’t remember much of him. I think he was balding.
But I remember the little girl. Lots of energy, wide-open eyes. I stared at her for a few seconds from the shelter of the employee exit. In a few minutes, she would find out that her mother was dying. But for that moment, at least, she tapped on the glass of the fish tank – which the sign expressly said not to do – and chattered to her father.
I left before Mrs. Morrison came out.
And, after all that, the new burger place down the street got my lunch order wrong today. Won’t be going there again.
I ran some tests today to check up on a Mrs. Morrison, a Huntington’s patient. I have a vague memory of diagnosing her – maybe eight or nine years ago?
She’s in a wheelchair now, and her voice warbled so much that her husband had to translate everything she said. Her hair was scrunched up at the back, flattened, brittle, and streaked with ghostly white against the head of her chair. Her arms and legs twitched and jerked, and if she sat too long, a little line of drool would start to snake down her chin. Nothing like the woman I can piece together from my memories: no trace of grey in the hair, shirt matching her shoes matching her purse. I doubt I would have remembered her at all were it not for her daughter.
She’s taller, longer, more mature – college-age, maybe – but I recognized her dark hair and green eyes as soon as I came into the room. Took me a minute to remember where I’d seen her before, but it came to me. That waiting room, where she sat with her father and poked at the aquarium. She hadn’t known yet, about her mother.
Today her father called her Antonia, though she introduced herself as “Toni.” She was not impressed by me. I imagine she’s spent much of her young life around doctors. She wiped the drool from her mother’s face with a tissue and stared at me with unreadable eyes as I explained my analysis of the results. Probably didn’t think much of my bedside manner; people rarely do.
She spoke up just as I gathered my papers and my clipboard to go. “Will I get it?”
I stopped. “I’m sorry?”
I phrased it as a question, but I knew exactly what she said. I am sorry.
“Will I get Huntington’s? They keep saying it’s genetic.”
“It is genetic, yes.” I watched her impassable face. She had to be fifteen years older than Millie, but she grabbed her father’s hand just the way Millie does mine. “There are tests we can do to see if you carry the gene.”
Antonia stared at me for a moment, then looked at her mother. It was like a dismissal, as if she were permitting me to go.
So I left.
Her eyes, dark green and hard, have stayed in my sight all day. Having a daughter is making me soft.
Rough day today. Didn’t make it home in time for dinner. Long hours, tough patients. One in particular.
Mrs. Morrison, the one with Huntington’s. She’s not long for this world. Her daughter, Antonia, brought her in. I called the daughter Toni – I’m working on my bedside manner, so I was trying to be thoughtful – but now, every inch the young professional, she’s back to Antonia.
I asked about her father. All she said was, “Heart attack.”
Her eyes are too old for someone as young as she is. She can hardly be out of college, and she’s alone in the world watching her mother waste away.
Maybe it wasn’t the right time, but I asked if she had thought any more about getting tested.
Her voice was flat, blank. “Why? If I knew, it’s all I’d think about.”
Millie’s around the same age now that Antonia was when her mother was diagnosed. I can protect her from so many things, but not my death. Let’s just hope I won’t have to worry about that for a while.
Took a half day today. Mrs. Morrison’s funeral. Tons of people – friends, family, acquaintances from her church, and myself, a neurologist who interacted with her three times before she died.
There were a lot of sad eyes on Antonia. They shook their heads and looked at her saying, “That poor girl. Lost her father and mother in one year.”
Maybe I’m callous, but she didn’t lose her mother today. She lost her mother in tiny pieces over the last fifteen years. The physical stuff wasn’t so bad – shaking, jerky movements, winding up in a wheelchair – but Mrs. Morrison lost her mind too. I’ve seen it happen before, many times.
She forgot where her keys were. She became a bit moodier. She had trouble planning out her week; she forgot to take her medicine. She couldn’t find her socks when they were just where they’d always been. She looked at friends with no spark of memory as to their name. She became volatile, lashing out at people and things because she had no concept of how she ought to respond. Of course, by this point her physical difficulties were so great that they disguised her cognitive decline. I didn’t see much of this personally with Mrs. Morrison, but if her Huntington’s followed any type of textbook progression, that’s about how it went.
I shook Antonia’s hand after the ceremony. She looked as if everything about her was doused in hairspray – waterproof, immovable.
She seemed surprised to see me, but she thanked me for coming. I made some small talk, asked about her job. She works for some kind of consulting firm or something. I’m not sure; I didn’t really listen. I couldn’t help thinking of Millie while I watched her face.
Perhaps she could see that I wasn’t listening. She stopped talking and stared at me, her lips pinched together as if holding something inside.
I waited a minute, watching. In a moment it burst out.
“I’m never getting married.”
That wasn’t what I’d expected. I asked her why.
“There’s always a chance I could have kids.”
“You don’t want kids?”
Her eyes bored through me. “I do.”
I’d better get to bed soon. Millie’s high school leaves for a band trip tomorrow, and I have to drop her off at the crack of dawn.
I saw Antonia, Mrs. Morrison’s daughter, again today. I suppose she’s not exactly a girl anymore, but that’s still what I think of every time I see her – a little girl with bright green eyes thumping her finger against the glass of a fish tank.
I didn’t talk to her today. I saw her from a distance in the hospital cafeteria. Nurse Martha nudged me with her elbow when she saw who I was looking at and said in a squeal-whisper, “She’s married! She told Amy in the NICU everything. He proposed in her parents’ old church, and then they got married in the same spot…” She went on for a while, but I stopped listening.
I asked what Antonia was doing in the NICU. Apparently she’s one of our volunteers now, holding babies whose mothers either don’t want them or are too strung out on meth to even realize that they have a baby.
I’d thought about Antonia several times over the past few years, wondering if she meant what she said about not getting married. Whether she meant it or not, apparently life happened. I hadn’t planned on getting married either, but now I’m driving my daughter to her band competition at 4am so that her mother can get some sleep. Life doesn’t usually care much about your plans.
I’m taking a few personal days to drive Millie down to college. Orientation starts Monday. Her mother’s going to cry the whole way home. Two months until fall break. Eight weeks.
I ran into Antonia Morrison in the cafeteria today, though she’s not Morrison anymore. Some weird Greek name ending in opolis. She’s been volunteering in our NICU for several years now, holding babies for anywhere from four to twenty hours per week, from what Martha tells me. Always the babies no one wants – the ones born skinny and wrinkled, not quite ready for the world, screaming and writhing from withdrawals. If anyone can care for them, she can.
I asked her how she’s been, and she said, “I haven’t shown symptoms yet, so I guess it’s a good day.” I looked at the ground, at my tray of food. She shook her head. “I’m sorry, I don’t normally say things like that. I just – when I see you, I think of her.”
I don’t know what I said after that. Nothing important. Maybe I asked about the honeymoon. Somehow we got around to the subject of kids. I think I mentioned Millie. Antonia’s only comment was, “Don’t worry, we’re not having kids.”
“Are you, uh, going to adopt?”
Antonia shook her head with a rueful smile. “Just so they can watch me die?”
What kind of a life would that be? I see her life from a safe, sanitized distance, and even I can’t stand it. I have a wife, a daughter, both my parents still living, no threat of imminent decay and death. She has no parents, is constantly waiting for the symptoms of a deadly disease which she may have, and can’t have babies with the man she loves because her children could die the same slow death that her mother did and that she most likely will.
I applied to med school because I wanted a nice car and a vacation house by the lake. Who am I to look at a few pictures, read some reports, and then walk into a room to tell someone that life as they know it is over? I spend ten minutes with a family every few years and watch their lives unravel a little more each time. And for that I get the nice car, the vacation house, the beautiful wife, the valedictorian daughter.
If I could keep Sarah and Millie, keep them safe and happy and well, I’d give up all the rest of it.
Millie got back from her honeymoon today. I’m still reeling from the wedding. No, I’m still reeling from her being out of diapers. And – Sarah gets angry with me if I say this out loud – but I can’t believe I just paid that amount of money for some kid to have sex with my daughter.
But he’s a good kid. A good man, really. I couldn’t have given Millie away to anyone who wasn’t worthy of her.
But as much as I love Millie, my daughter coming home wasn’t the most incredible thing to happen today. Antonia Something-opolis, who I suppose I’ve known for something like twenty-five years now if I’m counting correctly, is a mother.
Nurse Martha grabbed me this evening while I was writing notes and dragged me down to the nursery. I’m not the biggest fan of babies that aren’t mine, but Martha is persuasive, to say the least. She squeezed my arm with her lumpy grandma hands and squealed, “You just have to see this!”
Looking around, I didn’t see what it was that I just had to see. There were nurses. There were babies being rolled around in clear bassinets. There were mothers in hospital gowns, fathers with eyes purple-rimmed from lack of sleep, grandfathers and grandmothers and aunts and uncles and cousins and friends seeking out the rooms of their respective relations, letting out whisper-shrieks at the cuteness of the babies, and passing around the squishy-faced human burritos. Nothing out of the ordinary.
“A woman delivered the other day, all strung out on meth and oxy and what have you. But this mama recognized one of our volunteer baby snugglers from the last time she popped out a baby. She shoved her new baby at the lady and insisted that she take it. Guess who the volunteer is.”
A couple emerged from one of the rooms, cradling a gleaming car seat so stuffed full of blankets that I could see no baby. I noticed the man first. Tall, with curly dark hair as tight as steel wool and a nose too big for his face. The woman certainly didn’t look like she’d just had a baby – long and lean, with no red-rimmed eyes or misplaced lumps. Dark hair and green eyes.
Her husband held the car seat up at eye level, and Antonia stared down at the bundle of blankets inside it with a misty softness laced with panic.
I felt the same with Millie more than twenty-five years ago, when we brought her home from the hospital. I feel the same now, though the panic is mostly dormant.
Antonia didn’t see me today. Martha nudged me to go say hi, but I stayed back behind the counter. This was their day, not mine.
It was her day, whatever tomorrow might hold.
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Thank you for stopping by and giving your time to this story! There are so many great Substacks out there, so I’ve decided that with each of my stories I’m going to include a link to someone else’s story that I’ve read and enjoyed recently!
This week I loved reading the first installment of S.L. Linton’s Under the Roses, a retelling of the fairy tale “Beauty and the Beast.” Give it a read, if you haven’t already!
This is an *impressive* amount of character development for the length of the story. Nicely done. I wasn't expecting to start this morning with so much to wrestle with either, but wow, this was an experience.
Just beautifully written, Bridget.
I’m sincerely choked-up. 🙏🏻